Documentary: Undercover in German Lyme Clinics

[dadouv47]

But to respond to my own comment:


Perhaps the utility of the Arminlabs Lyme test that usually come out positive is this: if a doctor wants to try a long-term course of antibiotics on suspected Lyme patient (who may or may not have Lyme), but has no rationale for doing so, say because CDC-recognized Lyme tests came out negative (and thus perhaps insurance will not cover the cost of the antibiotics), then a positive result from Arminlabs might be useful for insurance coverage reasons.

At least in Europe no insurance covers long term abx for Lyme. But similar to what u said, it can give the diagnosis of Lyme disease some kind of credibility for the Doctor.

 

[Rick Sanchez]

There has been a lot of criticism against the Danish undercover documentary. Some Danish patients have made their own reply to the documentary, with the title 'Something is rotten in the state of Denmark' because they found there were too much things untrue:

Difficult to know what to believe, if you ask me...

Almost no ME/CFS patient group has received as much neglect as the Danish patients. Sadly, this has turned a lot of them into paranoid loons. Most of them seem to believe that almost everyone is involved in some grand conspiracy against them. Which is of course absurd, especially because Fink and co. are so clueless that they would never be able to pull something like that off.

Sadly, you have to take everything most Danish ME/CFS patients, or patients fitting in the ''funktionelle lidelser'' / ''Bodily distress syndrome'' category with a grain of salt. They are incredibly invested in wacky alternative treatments and useless and costy supplements. Because of the insane situation the Danish government has placed a lot of them in, this is the only hope that keeps them going.

 

[dadouv47]

Almost no ME/CFS patient group has received as much neglect as the Danish patients. Sadly, this has turned a lot of them into paranoid loons. Most of them seem to believe that almost everyone is involved in some grand conspiracy against them. Which is of course absurd, especially because Fink and co. are so clueless that they would never be able to pull something like that off.

Sadly, you have to take everything most Danish ME/CFS or patients in the ''funktionelle lidelser'' / ''Bodily distress syndrome'' with a grain of salt. They are incredibly invested in wacky alternative treatments and useless and costy supplements. Sadly because of the insane situation the Danish government has placed a lot of them in, this is the only hope that keeps them going.

Looks like it's similar in (almost) every country. I guess that's the consequence of many sick people being mistreated and despised.

 

[Hip]

I guess that's the consequence of many sick people being mistreated and despised.

Or it could also be due to the suspiciousness and paranoia symptom that some Lyme patients can suffer from!

 

[Jesse2233]

@Hip

A bit off topic but...

What are your thoughts on someone with repeat positive IgMs (from different labs) to mycoplasma pneumonia along with Coxsackie b4 titers and ME symptoms receiving a cocktail of antibiotics?

 

[dadouv47]

Or it could also be due to the suspiciousness and paranoia symptom that some Lyme patients can suffer from!

(I laughed because I love dark humor but some could not appreciate this )

 

[Hip]

@Jesse2233 A lot of ME/CFS patients have Mycoplasma co-infections, which can be treated with doxycycline, but whether it will help reduce symptoms I am not sure. I took a 1 month course of oral doxycycline myself in the earlier years of my illness, even though I had not been tested for Mycoplasma, just to see if it might help (which it didn't).

 

[pibee]

Or it could also be due to the suspiciousness and paranoia symptom that some Lyme patients can suffer from!

stop talking about me

 

[pibee]

well to be honest Lyme did cause a bit of paranoia in me, or it wa smaybe anti-muscarinic receptor antibodies

 

[Jesse2233]

Thanks @Hip

More relevant to the thread, how might a patient tease out which pathogen is a primary cause of their ME (assuming a chronic pathogen is to blame) and which ones are incidental.

I imagine there are many primary Lyme patients how also test positive for EBV due to past exposure and vice versa. Treatment implications are of course vastly different

Edit: I realize this is sort of an impossible question to answer, so take it more theoretically / philosophically

 

[Jesse2233]

Another more general question, are there documented cases of Chronic Lyme with ME-like symptoms being completely cured by antibiotics?

 

[Hip]

@pibee I have read that some Lyme patients may experience paranoia symptoms. For example, this article says:

Once inside the central nervous system, the organism can wreak all kinds of havoc, from memory problems, moodiness and depression to hallucinations, panic attacks, paranoia, manic depression, seizures and even dementia. Memory problems are the most common sign of a brain infection. When the organism invades spinal nerves, patients may develop numbness and tingling in fingers and toes and pain radiating to the front of the body.

I suffered some mild paranoia myself for a few years, as a result of my neurological virus triggering some mild psychosis symptoms (paranoia can be a sub-symptom of psychosis). Once you become aware of your own symptoms though, you can often compensate for them, or at least take them into account.

More relevant to the thread, how might a patient tease out which pathogen is a primary cause of their ME (assuming a chronic pathogen is to blame) and which ones are incidental.

If you have an active infection with any of the pathogens which researchers think can underpin ME/CFS, then those infections may well be playing a causal role. Such ME/CFS-liked infections include (roughly in decreasing order of prevalence): coxsackievirus B, echovirus, EBV, HHV-6, HHV-7, cytomegalovirus, Chlamydia pneumoniae, parvovirus B19, Giardia lamblia, Ross River virus (in Australia), Coxiella burnetii.

If you have two or more active infections with such ME/CFS-linked pathogens, then I think it is likely they are both playing a role (judging by research of Dr Lerner, who found that ME/CFS patients with such co-infections would not improve until all the ME/CFS-linked pathogens were treated with antivirals).

EDIT: actually, I am not sure about patients not improving until all the pathogens are treated, but Dr Lerner certainly would treat co-infections all at the same time, including viral co-infections (eg: active EBV + active HHV-6 treated with Valtrex and Valcyte respectively), plus treating co-infections like Borrelia, Babesia and Anaplasma. The relevant Lerner paper is this one.

Pathogens like Mycoplasma or Brucella might worsen ME/CFS symptoms like fatigue, but are not considered causes of ME/CFS. I actually had a recurrent urinary tract / kidney infection that would flare up every few weeks, with the flare ups lasting a few days, and during each flare up, my fatigue levels would be significantly worse (but kidney infections are known to cause fatigue even in those without ME/CFS). This shows how an infection can exacerbate ME/CFS symptoms, but not be a cause of ME/CFS.

 

[duncan]

I have read that some Lyme patients may experience paranoia symptoms. For example, this article

There are psychs whose entire practice is comprised of Lyme patients. Neuroborreliosis is Lyme brain, and brain infections are frequently going to result in psychiatric symptoms.

Another more general question, are there documented cases of Chronic Lyme with ME-like symptoms being completely cured by antibiotics?

The short answer is many. Lyme and ME/CFS can almost parallel each other. But you will struggle to find any such case studies under "chronic Lyme" since its meaning was corrupted. All you must do is look under late stage Lyme or neuroborreliosis or even just simply Lyme, especially in Europe, and find cases that are resolved with abx, which will be most.

 

[Mel9]

This documentary seems to show that, at least in some European regions, almost everyone has antibodies to Borrelia but only a few have weak immune systems unable to prevent the disease.

From a quick Googling, it seems the same applies for dogs.

My Questions:
1) why do some of us have immune sytems that fail against Borrelia?

2). Why don't pathology services use molecular methods like Next Generation Sequencing instead of the old fashioned, faulty antibody analyses?

 

[duncan]

why do some of us have immune sytems that fail against Borrelia?

Genetics? Failure of Bb's antigenic variation to work effectively in some due to its own deficiencies? Strain? Duration of infection? Combination of other infections including other TBDs? Bad luck?

2). Why don't pathology services use molecular methods like Next Generation Sequencing instead of the old fashioned, faulty antibody analyses?

If I had to guess, it might at least in part be due to the same thing that limits PCR's utility - you need to know where to look for the spirochetes since they don't linger in blood.

 

[Hip]

This documentary seems to show that, at least in some European regions, almost everyone has antibodies to Borrelia but only a few have weak immune systems unable to prevent the disease.

That's the only thing that would exonerate ArminLabs: if nearly everybody was seropositive for Borrelia. But we have no way of knowing the actual prevalence of Borrelia seropositivity, because there is no gold standard for Borrelia testing, and I believe Borrelia tests are tweaked by the lab to show whatever percentage of positive results and negative results the lab decides on.

 

[pibee]

@Hip , i know about paranoia in Lyme, so far, it very very responded to bactrim in my case. I guess not all cases are viral. Why would that be surprising...

 

[Rossy191276]

there is also another problem with diagnosing people with having Lyme when they have ME... this is that after initial rest practitioners generally encourage exercise as helpful... I was diagnosed with Lyme after being positive on LLT and I rested initially and though I had been cured by antibiotics only to crash even worse when I increased activity... as for Lyme doctors not advising strong antibiotics without extra evidence I have seen two of the most well known lyme ME/ Lyme doctors in USA and Australia and despite me saying to both that my symptoms were ME like I had never had cardinal symptoms of Lyme they both recommended IV antibiotics...

 

[duncan]

there is also another problem with diagnosing people with having Lyme when they have ME... this is that after initial rest practitioners generally encourage exercise as helpful...

Same for people who are diagnosed with both - we have to negotiate the recommendations of specialists that are at cross-purposes with each other. I always defer to PEM.

as for Lyme doctors not advising strong antibiotics without extra evidence I have seen two of the most well known lyme ME/ Lyme doctors in USA and Australia and despite me saying to both that my symptoms were ME like I had never had cardinal symptoms of Lyme they both recommended IV antibiotics...

Maybe they were thinking what many consider cardinal Lyme symptoms likely are not, e.g. swollen knees, fever aka Steere's Disease. Many Lyme experts will list symptoms that are almost identical to ME/CFS, with the possible exception of PEM - but if you wander Lyme forums, you will sometimes see discussions of what they don't know is PEM.

 

[nandixon]

But this does not explain why the rashes cleared up

It possibly can, because the anti-inflammatory action that a number of antibiotics (e.g., macrolides) have is related to their ability to modulate the levels of pro- and anti-inflammatory cytokines. Dysregulated cytokines can cause rashes. So an antibiotic’s ability to normalize cytokine levels might improve a rash.